The PROFILES registry

Cancer is viewed as a chronic disease for an increasing portion of cancer patients. In the year 2000, there were approximately 400,000 cancer survivors in the Netherlands; this is expected to increase to 700,000 in 2015. The majority of these survivors will be long-term survivors (>5 years after diagnosis).

The evaluation of new treatments and care protocols for cancer patients is traditionally focused on biological outcomes, specifically disease-free and overall or relative survival. However, today health-related quality of life (HRQoL) is also recognized to be important, especially since many new therapies have only a marginal impact on survival rates, and many survivors face continuing physical and psychosocial problems after completion of primary treatment. Achieving and maintaining optimal well-being is an important objective of current cancer treatment and of cancer rehabilitation and aftercare.

The Netherlands Cancer Registry compiles clinical data of all individuals newly diagnosed with cancer in the Netherlands. On a daily basis, cancer registration clerks register newly diagnosed cancer patients since 55 years. Over the past 35 years, this registry has provided clinicians and researchers with a wealth of clinical data (e.g., stage and primary treatment) on cancer patients of all ages. However, data on patient-reported outcomes have not been available in the Netherlands Cancer Registry. In the past 10 years, several studies have therefore been set up among currently >10.000 cancer survivors to add patient-reported outcomes to this clinical database. These patient-reported outcomes were collected using paper-and-pencil questionnaires, with response rates of 75-80%. Although this form of data collection proved to be feasible, it was also time-consuming and expensive, especially in longitudinal projects with repeated assessments of large cohorts of cancer survivors.

The high penetration rate of internet access in the Netherlands (96% in 2014) makes it feasible to develop a web-based registry. Online administration of questionnaires has a number of advantages compared to paper-and-pencil questionnaires, including convenience for the participant, potentially large cost savings, efficiency in data collection, and high quality of the data. Therefore, we have developed a registry, including a large web-based component, for the collection of longitudinal data on the physical and psychosocial impact of cancer and its treatment. This PROFILES registry is linked to the Netherlands Cancer Registry, thus allowing merging of patient-reported outcomes and clinical data.